so today was a very eventful day for Malachi.
At 8:30 this morning they took him in for an upper GI small bowel follow through to check for reflux. Sure enough, as we were suspecting, it is pretty significant. He has been able to keep all of his feeds in his system the past few weeks because his meals are put into his belly over 90 minutes of time. Basically, this means that when they insert his G-tube for direct access feeding, they will also do what is called a Nissen fundoplication. This will most likely take place next week sometime.
When I arrived on the scene there were quite a few people and a couple extra machines standing around Malachi's bed. It's the kind of scene that makes you feel like you've just been punched in the gut.
When I got to Chi's bedside, I realized the fellow was doing an echocardiogram to evaluate the bloodflow going through the sano shunt they placed during heart surgery which takes blood from the heart into the lungs. They did this for roughly an hour, poor guy. They weren't done yet... They waited around for the actual cardiologist who proceeded to evaluate him and take some specific measurements. Nope, still not done. THEN, they added some nitric oxide to his airway and took more measurements. They believe this helped, so they are starting him on the generic viagra to help increase bloodflow through the sano shunt. Apparently, it hadn't kicked in yet and he had a crisis event this evening regarding his desats. They are giving him nitric oxide through his ET tube and will continue to do so for 12 hours. At that point, they will begin weaning him and will keep him on at least a small amount of it for the next several days.Also, they did give an interpretation of his brain MRI. The doctors are not completely sure how the findings will impact Malachi, but he stated that his life expectancy is not directly compromised by any brain abnormalities. On the MRI they found bilateral subdural hematomas of the frontal lobe (small brain bleeds that no longer seem to be active), diminished white matter, and thinning of his corpus callosum. So, thats today. I can't even begin to fathom what our tomorrow looks like.
A few pictures: Not sure why this uploaded sideways or upside down, but you can see the central line catheter as well as his chest scar from surgery.
The one with the cute gym socks ;)
It all sounds so familiar! The memories are way too fresh for me to not feel an ache in my heart when I read this. I feel such encouragement when I remember:
ReplyDeleteIsaiah 44:24 Thus says the LORD, your Redeemer, and the one who formed you from the womb, "I, the LORD, am the maker of all things, Stretching out the heavens by Myself And spreading out the earth all alone"
And now a small note to Malachi:
My dear sweet boy, whom I may never physically meet, please decide that there has been plenty of drama. :0) We all agree that NICU life lends to excitement but we would much rather it be in the way of you preparing to come home. ;0) Sit back, relax, breathe deeply and become strong enough to journey home. I realize that it is an unfamiliar place to you...but assure you, it is MUCH cozier than what you have going on there.
One of your biggest fans,
amber
P.S. LOVE the tube socks! ;0)